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£2 million project to support UK dementia carers

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Researchers at the University of East Anglia and Norfolk and Suffolk NHS Foundation Trust (NSFT) are launching a new project to improve the lives of dementia carers in the UK.

They will work with carers and healthcare workers to co-develop and test a new ‘Carecoach’ support package – backed by £2 million in funding from the National Institute for Health Research (NIHR).

The aim of the blended care initiative is to help dementia carers stay emotionally and physically well – which is crucial for both the carer and the person they support and care for.

The project is particularly important in relation to the coronavirus pandemic, which has left many people with dementia and their carers more isolated than ever.

The project is being led at UEA by Dr Jane Cross from the School of Health Sciences and Prof Chris Fox from Norwich Medical School.

Dr Cross said: “Around 700,000 family carers support 850,000 people in the UK with dementia.

“Dementia is a deteriorating condition where the person loses one ability after another. Caring for someone with dementia puts enormous strain on the family carer’s energies, resilience, physical and mental well-being and family relationships.

“The coronavirus pandemic has put an additional stress on carers, many of whom are older, vulnerable or shielding. It means they can become even more isolated and cut off from their wider support network of family, friends, health services and support groups.

Prof Fox said: “We know that family carers provide significant support for people with dementia with very limited support for them. But it’s really important that carers get the right support too.

“We want to help carers improve their quality and life, mood and sense of being able to care well.”

Previous research has shown that intervening early to support carers builds personal resilience and enhances their ability to cope.

The research team will build on work carried out in the Netherlands, where a ‘Partner in Balance’ intervention has already been shown to reduce the burden and stress of caring for a family member or friend with dementia.

Prof Fox said: “We will develop a UK version of the Partner in Balance programme combining face-to-face sessions, a web-based home programme and support from a coach.

“The Carecoach support package will include additional film clips and other materials to better reflect the UK population and care situations.

“We will work with family carers and healthcare professionals to develop and test our new blended care approach – to really make sure it works in real life,” he added.

Juniper West, research development lead, older people’s services at NSFT, said: “In 2018-19, our research team ran a project to identify top research priorities, involving 126 service users, family or friend carers and clinical staff from our dementia and older people’s mental health services.

“The top priority was around training and support for informal caregivers for people with dementia, so the Carecoach research programme addresses very important, locally expressed needs.

“I have been fortunate to work with Geoff Fenwick, a family carer originally involved in our research priorities project with his wife Susie, who will now work alongside our team in delivering the Carecoach study.”

The research initiative will be led by UEA and NSFT, in collaboration with the University of Bradford, London School of Hygiene & Tropical Medicine, the University of Nottingham, the University of Amsterdam, and Maastricht University.

The team will also work with collaborators including Dementia UK, the Alzheimer’s Society, the TIDE network of carers, former carers and health and care professionals (Together In Dementia Everyday) and INTERDEM (the European network on research into early detection and timely intervention in dementia). Software will be developed by Ilionx.

The project is hosted by the Frailty Research Group which is part of UEA Health and Social Care Partners (UEAHSCP).

Geoff and Susie Fenwick’s story

Geoff has been married to Susie for 31 years, in late 2011 they first noticed a decline in Susie’s short-term memory. In spring 2012 they sought medical advice and Susie was eventually diagnosed with early onset Alzheimer’s.

Alzheimer’s affects people in different ways, in Susie’s case she became anxious and withdrew from friends. She had taken early retirement and was at home on her own – not easy when you are having to accept and adjust to dementia. Geoff, who will be a co-researcher on the new Carecoach study, soon ran his business down and retired in 2015 so he could become Susie’s full time carer.

Geoff said: “Acceptance I feel was probably the first and hardest step to take when coming to terms with dementia, once we had achieved that we were able to take a more proactive approach in adapting our relationship and lifestyle to the demands of dementia. Focussing on what we could do, not what we could no longer do.”

One of Geoff and Susie’s many strategies was to take part in research, both clinical trials and lifestyle assessments. They started Susie’s clinical trial in London in 2013 which is still ongoing and gives them access to possible new treatments yet to become available through the NHS.

They have also found lifestyle research to be equally important as it helps health professionals understand what it is really like for both the person with dementia and their carer.

Geoff said: “We joined this in 2014 and have taken part in several different studies run locally by NSFT and UEA over the last six years – all very interesting and enjoyable for both of us – the kindness and respect we have had from the researchers has been second to none.”

However, Geoff feels Carecoach is different as its ultimate aim is to help carers establish viable techniques and strategies for coping with the challenges that dementia throws up for both themselves and the people they care for. It is not aimed at health professionals, it is aimed at an army of untrained everyday people who need help.

“As a co-researcher and existing carer my involvement in the project will bring vital first-hand experiences to help model the training programme,” he said.

“Personally, it will be a boost for my own mental health wellbeing and hopefully I will learn a few new tricks along the way, as well as being able to share ideas that have worked for us. If you want to know the road ahead ask those coming back.”

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“I wouldn’t wish it on anyone, but I’m glad my brain tumour happened in a way”

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Helen and Megan have both experienced cancer in different forms

After Helen Bulbeck’s daughter Megan was diagnosed with a brain tumour, the whole family was left isolated with little to no support. Now she is using this experience, plus her own journey with cancer, to help run the UK’s leading brain tumour support charity Brainstrust.

“It was at the time when Rohypnol was doing the rounds in the local pub, so I just thought maybe her drink had been spiked.”

This was Helen Bulbeck’s initial reaction to her daughter, Megan, collapsing after a night out and being omitted to A&E in 2006.

She later realised that it was the start of a lengthy battle, as MRI scans revealed Megan had a brain tumour.

To complicate matters, surgeons opted not to operate unless the tumour showed signs of developing.

And so began Megan’s monthly brain scans, all while she was completing a History of Art degree.

“University was where Megan’s priorities were,” Helen tells NR Times. “The main focus at that point was to get her epileptic episodes under control.

“We weren’t referred to a neurosurgeon until the following January – that’s six months after her first episode.

“We were completely out of our depth; we had no idea what was going on. We had been told in October that she had a brain tumour, but that was it.”

It was the lack of available support that really concerned and surprised Helen.

“There was nothing,” she says, when asked about the help they received after Megan’s diagnosis. “We were just left in a vacuum.

“That’s what I couldn’t understand, because if you’re diagnosed with breast cancer, you’re assigned a clinical nurse specialist. We didn’t have that.

“I spent a long time on the internet trying to find where the support and information was and I desperately needed to talk to somebody about the impact that this diagnosis had, but there was nobody.”

Helen was left on her own in search of a solution for Megan, spending countless hours learning more about brain tumours and possible treatments.

This led her to discover neurosurgeon Peter Black from Boston, who agreed to operate on the tumour after a consultation.

The severity of brain tumours is graded from one to four. Black was the first surgeon to tell Megan she had a grade two tumour, but it could transform into a higher grade within five years, with the consequences being potentially fatal.

With that in mind Megan decided she would have the tumour removed. Because of the risks involved with the surgery, however, the procedure was delayed until after she had finished her studies.

Through all this Helen was fighting her own battle after being told she had head and neck cancer.

She quickly underwent radiotherapy and surgery, knowing she needed to stay strong for her daughter.

“I was just focused on getting fit so that I could go with Meg to America for the surgery.”

Helen was able to make a full recovery, but then faced the challenge of funding Megan’s £30,000 surgery.

Megan’s group of friends were desperate to help and agreed to do some fundraising, eventually smashing their target and generating £70,000.

After this, things finally started to run smoothly. Megan was able to finish her degree and successfully underwent surgery in 2007 which saw her tumour removed.

“We had such a good story and we’d learned so much,” Helen says. “We thought we’ve got one of two options; we can either go back to our lives as they were and donate what we’ve got left to another charity. Or we can use those funds to set up a charity which was going to close the gap in the marketplace.

“Who do you turn to the day you’re told you have a brain tumour? There’s nobody out there and we didn’t want people to feel as lost as we did.”

From this Brainstrust was born.

Starting off simply as a helpline, the charity has evolved into a support trust with UK-wide reach, developing communities to reduce isolation, build resilience and enable people to live the life they want.

It focuses on providing evidence based information around brain tumours and its support specialists can point people to the correct resources, without forcing anything upon them.

“The only other charities that existed at that time were all to do with lab-based research, there was no charity out there where you could pick up the phone and ask for help.

“Because we have that experience, we knew what the information was that people would want to hear.

“Meg and I knew what it meant to be both a patient and a caregiver, so we used that 360 degree perspective to support others.”

Since then Brainstrust has gone on to support thousands of patients and their families.

The vast majority (93 per cent) of those that contacted the charity reported a positive outcome, with nearly 1,000 new patients engaging with it in 2019.

Since its founding in 2006, care around brain tumours has drastically improved.

It is the most common form of cancer that affects those under 40 and it is one that is rising at the fastest rate in over 65s.

Discussing how attitudes to brain tumours have changed, Helen says that new technologies can lead the way to better outcomes.

“Your first line treatment with a brain tumour should always be, where possible, neurosurgery. That was what saved our daughter’s life.

“I think the technology is absolutely key and probably until the last five years, that’s been hugely ignored, but it is catching up.

“In terms of the actual therapies, I think with radiotherapy we’ve made huge advances.”

Despite this progress, Helen says there are still huge differences between the treatment of brain tumour patients and those with other cancers and conditions.

She draws on the example of post-stroke rehab and the general care stroke survivors receive.

“Stroke patients get a wonderful wraparound reablement service and I’d love to see brain cancer having a parity.

“I find that some of the attitudes are a bit nihilistic, as in if you’re diagnosed with a glioblastoma people tend to see this as life limiting with a poor prognosis so it’s not worth investing in. I think it absolutely is.

“That’s the one thing I would love to be able to transform, the day somebody has a brain tumour,
they immediately get that same wraparound care.”

Megan is currently living a happy and healthy life since her surgery, being able to get married and gifting Helen with two granddaughters.

She still undergoes regular brain scans and, after becoming a qualified coach with Brainstrust, she is now training to become a psychodynamic psychotherapist (a discipline involving the interpretation of mental and emotional processes rather than focusing on behaviour).

Reflecting on her journey Helen describes her pride in the work they had done so far, but admits there is still much work to be done.

“It’s been a highly emotional rollercoaster at times, we get very tired but it’s not a job it’s a vocation.

“It’s important not to forget that before we’re patients, we’re people and I think the more we can get clinicians to recognise that sitting in front of them is a person not a patient, then that person is going to be much more resilient.

“Just hearing the testimonials of the impact that our work has had is what keeps us going.

“I will always remember Meg saying to me ‘I would never wish a brain tumour on anybody, but in a way I’m glad this has happened because of what we’ve achieved.’”

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Loneliness in lockdown – how have survivors been impacted?

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Loneliness in lockdown among brain injury survivors is the subject of a new research study which hopes to shine a light on the ongoing issue of isolation. 

While loneliness for the wider population was something rarely previously experienced prior to the COVID-19 pandemic, for those living with a brain injury, the everyday reality is often very different. 

And through this new study, researchers hope to discover the true effect the pandemic and its necessity for survivors to stay at home – and in some instances shield for several months – has had and how their protective factors have impacted on that. 

The project, by the University of Sunderland in conjunction with Headway, is currently gathering participants for its pioneering research, which will compare the experiences of people living with brain injury to those without. 

Led by Dr Stephen Dunne, who has a long-standing research interest in social factors which affect brain injury and stroke survivors, he hopes it will both raise awareness of the ongoing issue of loneliness many people face, as well as helping to inspire action.  

“There is a dual focus to this project – loneliness is something known to the masses now more than ever before; it’s not just something felt by a particular part of the population. For a neurotypical individual, I think it has shown what life can be like to be lonely in ways they may never have known previously. 

“An important point of our research is to try and understand how, for people with brain injury, their loneliness and their perceptions of loneliness have been affected during the pandemic – has this been heightened over the past year and been exacerbated by lockdown? 

“Or have they actually felt less lonely than neurotypical individuals, as they have had the experience pre-pandemic of adapting to life like this, and already have the support strategies in place?

“But crucially, the future of this project isn’t to define loneliness, understand its impact, then drop it – we want to understand it so that we can facilitate the removal of barriers so we can bring about strategic improvements to the wellbeing of people living with brain injury.” 

Dr Dunne and his team are seeking brain injury survivors nationally to take part in the research, which will be done by a survey: https://sunduni.eu.qualtrics.com/jfe/form/SV_czH5B8R5kieDgQR and an optional additional interview with the team remotely via Microsoft Teams. 

“We’re at a crucial stage now where we appear to be coming out of restrictions, but the experiences of the past year are still very real for so many people,” adds Dr Dunne. 

“We want to do this at the right time, before reintegration into society starts to happen and we are looking retrospectively, so we’re keen to hear the experiences of as many people as possible.

“We want to better understand loneliness and its impact, so we can help to bring about change for the future. Understanding the journey of brain injury survivors over the past year is a key part of us being able to do that.” 

For further information about the research study, or to share experiences through an interview with the research team, contact Stephen.Dunne@sunderland.ac.uk

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Temporary concussion substitutes ‘must be introduced by June 1’

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Temporary concussion substitutes must be included in the current trials underway in the Premier League to safeguard the safety of players, players’ unions said today. 

FIFPRO and the PFA have called for the introduction of temporary substitutes no later than June 1, and for the scope of the 18-month trial – which enables a team to replace a player who has sustained concussion, but on a permanent basis – be extended to include parallel trials for temporary substitutions. 

In an open letter to IFAB, football’s lawmakers, FIFPRO – which represents over 65,000 professional footballers worldwide – and the PFA highlighted the cases of West Ham United’s Issa Diop and Sheffield United’s George Baldock in making their case. 

“Player safety and welfare is paramount, and should be the only priority,” they say in their letter. 

While both bodies were supportive of the permanent concussion trials when introduced, such incidents – added to the new FIFPRO poll, which shows 83 per cent of 96 professional football club doctors at top-flight European club believe temporary substitutes should form part of future protocol – have shown that action needs to be taken. 

“In England, since the trial began, we are aware of two incidents where a temporary substitution option would have better protected players,” states the letter. 

“In each case, the players suffered from a head injury but, following an initial on-field assessment, continued to play. They were subsequently removed when it emerged their head injury was worse than first thought.

“These cases underline our concern that permanent substitutions do not give medical teams the appropriate environment to assess a player with a potentially serious head injury.

“The reality of the in-game situation is loaded with pressure. Medical teams can be presented with a situation where a globally broadcast match is on hold, awaiting their assessment. They have to make a potentially game-altering decision in a multi-billion-pound industry.

“We have no doubt medical teams act in the sole interests of the players. However, the rules do not do enough to support medical personnel. Pressure on them will be amplified with the return of crowds.”

The letter states that the inclusion of temporary concussion substitutions, which they propose should be tested in parallel with the current trial, will:

  • Provide medical teams with additional assessment time
  • Allow for the assessment to take place in an appropriate environment
  • Permit a match to restart with neither side numerically disadvantaged
  • Reduce pressure on players and medical staff to make quick decisions.

“In December 2020, we welcomed the decision by IFAB to invite competitions to trial permanent concussion substitutions,” FIFPRO and the PFA state.

“At the same time, we have remained in favour of testing temporary concussion substitutions. This has been our position for many years.

“Since the beginning of IFAB’s permanent concussion substitute trial, we have seen several incidents where the new laws of the game have fallen short of their objective and jeopardised player health and safety.”

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